Category Archives: From Our Chapters

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In 2019, the NCE Steering Committee will welcome new leadership and new members. The steering committee serves as NCE’s governing body and is responsible for supporting the development and implementation of a robust professional development program for executives, management staff, and volunteer leaders in The Arc. Please join us in thanking Carrie Hobbs Guiden and the 2017-2018 committee for their time, energy, creativity, and commitment — and please welcome your 2019-2020 committee members:

After two wonderful years, we bid farewell to Carrie Hobbs Guiden as our NCE Steering Committee Chair. Carrie reflected on her tenure as chair with us, as well as how to get more involved with NCE and take advantage of all that it has to offer!

Your time as NCE steering committee chair is coming to a close after 2 years! What’s your most memorable moment (funny, ridiculous, triumphant, or otherwise) from your time as chair?

The two years have gone by so quickly that it is hard to pick out just one particular moment. I think my most memorable moment as NCE steering committee chair has been handing out the awards at the NCE Awards Luncheon both in San Diego and Nashville. It was such a privilege to meet and honor the amazing leaders in our network and hear their stories. And while this isn’t a specific “moment,” per se, I’ve really cherished the time I’ve spent working with the two Vice Chairs – Karen Shoemaker and Chris Stewart. We’re not only close professionally, but personally as well. We have supported each other through some challenging personal situations that helped us really become a cohesive team.

What was your most challenging moment?

For me the most challenging moment was making the call to tell two steering committee members that they would be rolling off. There is this internal struggle between not wanting to lose that contribution from members that have been extremely passionate, involved and committed but also knowing that the only way to bring new people onto the committee is to allow for that changeover. Change is always difficult for me anyway, but I have found as I get older I can deal with it more effectively.

Do you have any advice for those wanting to get more involved with NCE, either in a leadership or participatory capacity?

Just do it! NCE has many different task groups – events planning, silent auction, awards, chapter resources – that provide opportunities for anyone interested in becoming more involved in NCE to do so without an extensive time commitment. These task groups also give you the opportunity to decide if you want to get more involved and serve on the NCE steering committee. My initial involvement came as an invite to be on what used to be the NCE Membership Committee. For me, being involved in NCE at any level has been a great way to get more connected to the professionals in The Arc network. It is easy to get caught up in the day-to-day that happens in your own state and forget that we have a national network of leaders from which to seek information, learn new ideas, and get support. When I reach out to others in NCE, I often find that they are dealing with similar issues, but in different ways. So I can get a lot of creative ideas from others that I wouldn’t necessarily come across if I didn’t look outside my own state.

What’s next in your career?

I’m not sure. I really enjoy my role as a state chapter exec – but there is always part of me that considers returning to my roots as a provider. I can say with certainty that I always see myself connected to The Arc in some way and working with people with I/DD and their families. I just cannot imagine doing anything else. And as long as I am connected to The Arc and people with I/DD, I will remain involved in NCE.

A statement from The Arc of Greater Pittsburgh, known as ACHIEVA, on the shooting at Tree of Life Synagogue this weekend. Two of their clients, Cecil and David Rosenthal were victims of the attack.

On behalf of the Board of Directors and Staff of The Arc, we offer our most heartfelt sympathy to the entire ACHIEVA family on the tragic loss of Cecil and David Rosenthal.

The ACHIEVA family is devastated at the loss of two well-respected members of our community. Two extraordinary men, brothers Cecil and David Rosenthal, were victims of the tragedy at the Tree of Life Synagogue.

Cecil and David had a love for life and for those around them. As long-standing recipients of ACHIEVA’s residential and employment services, they were as much a part of the ACHIEVA family as they were their beloved neighborhood of Squirrel Hill.

They loved life. They loved their community. They spent a lot of time at the Tree of Life, never missing a Saturday. “If they were here they would tell you that is where they were supposed to be,” said Chris Schopf, Vice President, Residential Supports, ACHIEVA.

Chris added, “Cecil’s laugh was infectious. David was so kind and had such a gentle spirit. Together, they looked out for one another. They were inseparable. Most of all, they were kind, good people with a strong faith and respect for everyone around.”

Our collective hearts are heavy with sympathy to the Rosenthal family, and to all who were affected by the tragedy at Tree of Life.

Last year, a client at The Arc Mercer approached Executive Director Steve Cook to confide in him about his struggles feeling accepted in the community. It was an “aha” moment for Steve – and one that led to the creation of what is believed to be among the first initiatives that exists to meet the support needs of individuals with disabilities who identify as LGBTQ.

Tell us about the SNAP program and how it came to exist! What type of activities does it involve?

I decided The Arc Mercer would commit to developing a program that not only met the needs of someone who identified as LGBTQ with special needs, but that we would share our experiences to allow others to replicate the program.

That is basically how SNAP was formed.

How is the program helping you build a presence and connections/partnerships in your community – both with media and with other organizations?

SNAP has garnered incredible media support due to its unique status as one of the first of its kind in the nation.

As we shared this organization’s mission throughout New Jersey, and the region, we found leaders of other organizations are receiving feedback from their frontline staff about the need for LGBTQ supports for those that they serve. This has led to an incredible surge in awareness by organizational leaders about the need for this type of support.

How do you create that safe space where individuals to feel comfortable participating in the group activities?

One of our first steps was to identify staff within our organization who sympathize with, and support, the mission of SNAP.

This allowed us to build a supportive environment for those we serve to engage in community activities and dynamic professional counseling sessions (through our health care clinic) that focus on creating integrated and safe community events and professional counseling sessions (individual and group), that have evolved into a social environment for members of SNAP to thrive within.

What does the future of the program look like to you?

It is our hope that the framework of our current SNAP organization, including integrated community events, and a comprehensive counseling program (that encourages individuals, their friends and family, and others who identify as LGBTQ with special needs, to openly communicate about how they feel and their goals), will be able to be replicated throughout the nation.

Why do you think establishing groups like this is important? Do you have any advice for other chapters looking to build out programs that address traditionally underserved/under-represented communities like this?

Chapters of The Arc have always strived to find best practices and share them with other chapters nationally.

I think our experiences will allow others to build programs that create safe environments for those we support to be integrated, healthy and safe in the LGBTQ community.

My advice to any chapter looking to replicate our program is to identify those in your organization who support this mission and encourage them to organize events with LGBTQ organizations in local colleges, schools and community organizations.

More importantly, identify counseling resources to support staff, family members and those we serve who identify as LGBTQ.

This may be hard, but thanks to a suggestion by a member of The Arc’s national team (Allen Miller), we are exploring the use of telemedicine (counseling) through our Healthcare Center.

Of course, I am always available to talk directly with anyone who wants to explore forming a similar group at stevencook1@msn.com.

In fall of 2017, The Arc of Colorado welcomed Christiano Sosa as its new Executive Director. With a strong background in cause-driven work, Christiano has spent his first few months at the helm achieving big policy victories in employment, housing, DSP wages, and more.

Welcome to The Arc Family! Can you tell us a little bit about your background, and what drove you to become involved with the disability sector?

I have worked in social justice the entirety of my career, and I can’t imagine not being involved in social justice. I can’t think of a better organization that aligns with my values more than The Arc. The last 12 years I have worked in philanthropy providing resources to great non-profits that took on the work of addressing systems issues. While I loved my work in philanthropy, I came to understand that money alone cannot solve the problems unless system changes are effectively implemented. This came to be my calling.

What are some of the top priorities for your chapter right now, and how are you addressing them?

We certainly have our eye on reducing the waitlist so people get the right services at the right time. We will be looking at the settings rule and how that is implemented in Colorado. We will be working with our partners to ensure all of the rules and the promulgation of those rules are informed by the collective experience of the 14 chapters across the state. Inclusion and equity, in all of its forms, needs to be top of mind when we think about any systems or policy change. It will be a central focus of the Arc of Colorado moving forward.

Your chapter has worked heavily – and effectively – on a variety of legislative advocacy at both the state and national levels. Tell us about some of your biggest wins over the past few months.

We had tremendous wins in this Session. All five of our prioritized bills went on to the Governor. We had a priority in ensuring that people with intellectual or developmental disabilities have clear paths to employment, and through our work with our partners at the Department of Health Care Policy and Financing (HCPF), the Disabilities Council, the Arc of Larimer County and countless others, we ensured that people understand best practices under discovery and intake. People with I/DD in the state now have landlord tenant rights, which they were previously excluded from. We were able to increase Direct Service Providers’ wages 6.5 per cent. We whittled down the waiting list for the Comprehensive Waiver to close to three thousand. We were able to reauthorize the Child Mental Health Treatment Act and make that permanent. Finally, we were able to move the Children’s Habilitation Residential Program Waiver (CHRP) over to HCPF from the Department of Human Services, and eliminate the previous waiver requirement that parents give up their custodial rights if their child has mental health needs and requires residential treatment.I am happy to share our journey with others at csosa@thearcofco.org.

What are some of the greatest challenges and opportunities you see on the horizon for The Arc of Colorado?

I am fortunate to come into an organization that is widely known and respected at the Capitol for our bipartisan work. This is difficult, complex work. It takes whole communities to rally together. The measurement of success for me will be when I see individuals with I/DD getting the right supports at the right time, throughout their lifetime and are part of society in ways they haven’t necessarily been in the past.

What advice do you have for other chapters working to ramp up their advocacy efforts?

It is incredibly important that we work on a bipartisan level. Fundamentally, I believe policy issues around individuals with intellectual or developmental disabilities are bipartisan. Our job is two-fold, one is about education and the other is to work with our elected officials so the voices of people with I/DD are heard. Beyond this, we must always be sure that inclusion and equity are the top values that we adhere to, if inclusion and equity come first, good policy can follow.

Tell us one fun fact about yourself.

I am a certified cake decorator in buttercreams, fondant, gum paste and a variety of other techniques. I find the work relaxing and there is the bonus of sampling the creations!

We want to hear about the amazing work your executives are doing in chapters across the country! If you’re interested in being spotlighted, please email Pam Katz at katz@thearc.org.

Throughout 2017, The Arc of Kentucky and The Arc of Central Kentucky participated jointly in The Arc’s Health and Fitness for All program. Health and Fitness for All addresses increased obesity propensity in the disability community by teaching healthy eating, portion control, and physical activity and helping individuals with I/DD adopt healthy habits and lead healthier lives. Sherri Brothers chatted with us about the chapter’s work, the importance of teaching healthy habits, and how other chapters can do the same.

Tell us about your chapter’s Health and Fitness for All efforts. How did you hear about the program? How are you tailoring the program to your chapter and participants?

Health & Fitness was created in Kentucky because of the obesity rates, sedentary lifestyles, and unhealthy eating habits. Some of our individuals were not well- educated in nutrition facts or the options of exercise. The Arc of Kentucky heard about the program through The Arc of United States. We created an individualized program for each person. One young man with autism in our program loved writing but had no interest in exercise at all. A psychologist used the young man’s interest in writing to facilitate a relationship with others who loved writing. We created a program where he would start working out on a stationary bike while at the same time sharing his stories with his peers and the psychologist. He now enjoys exercising and looks forward to class each week.

Why do you think it’s important for people with disabilities to learn about living a healthy lifestyle?

Chronic ill health can diminish an individual’s enjoyment in and ability to engage in all that life has to offer. By providing people with I/DD an opportunity to make informed decisions about their health by educating them on the value of proper nutrition and exercise and the impact it can have on how they feel physically and emotionally, we are giving them the tools to own their well-being. That is the key to success.

Was the program successful? How so?

Yes! We have seen so many positive outcomes in the time we’ve been running the program: program weight loss – 168 pounds; lowered blood pressures, regular participation in exercise programs; participants learning how to shop and making healthier food selections; learning how to prepare healthier meals; and improved self-esteems and friendships made. At our three-month post-training check in, Annie has lost an additional 38 pounds and wants more information about healthy diets. Josh is watching his diet and is using less salt. Shaud is drinking more water and changed to drinking diet soda over sugary drinks. Nyketta has joined the YMCA to be able to continue her exercise.

Are you planning on expanding the program past the conclusion of the 12-week training? How so?

We passed the 12-week program and are planning to offer an additional four weeks of fitness classes in the fall and four weeks of cooking classes. We are also starting The Health & Fitness for All in other local chapters around the state. I am visiting with them, providing materials to them, and replicating the program which was very successful in our chapters — although encouraging them to tailor the program to their individuals’ needs. This just gives them a starting point – some helpful materials, ideas to start creating field trips, speakers, activities, games, etc.

What advice do you have for other chapters looking to implement health and lifestyle programs to enrich the lives of their constituents?

My advice is to look at the program as an enjoyable lifestyle change for the individuals. Think of it as creating a fun atmosphere for them to create the class, participate as the leaders in the class and the games. For instance, you teach a dance class, and then have each participant lead their favorite dance routine.

Tell us about all the great things your chapter is doing! If you’re interested in being spotlighted, please email Pam Katz at katz@thearc.org.

For over 15 years, Comcast Cares Day has provided an opportunity for Comcast NBCUniversal staff to volunteer their time with non-profits, schools, parks and other organizations to a positive impact within their local communities. Once again this year, chapters of The Arc across the country partnered with ComcastUniversal – and The Arc of Macomb County was one such chapter. Lisa Lepine, the chapter’s executive director, chatted with us about her chapter’s work and the value of inclusive volunteering.

Tell us about your project for Comcast Cares Day! What type of project did you do? Are there any other community entities or groups that you partnered with? How many people did you impact in your community?

Approximately 50 Comcast volunteers, from ages 6 to 60, spent Comcast Cares Day with more than a dozen employees, board members, and clients of The Arc of Macomb. The Arc of Macomb serves several hundreds of people per year, including operating a day program, organizing community outings, and providing employment services for people with developmental disabilities. Comcast volunteers organized the project of removing landscape rocks and weeds, installing barriers, and replacing the rocks; cleaning other landscaping and hardscaping; and repairing and painting walls inside the building. Some of Comcast’s employees drove almost two hours to attend the event! Several of the younger volunteers painted rocks to distribute throughout the grounds, beautifying the appearance for The Arc’s employees and clients. Both frequent and new visitors have appreciated and commented on the improvements from Comcast’s volunteers.

How did you get connected with Comcast?

The Arc of Macomb has used Comcast Business for its internet and phone systems for approximately four years. The Arc chose Comcast for its reputation for reliability and service. Although occasional outages are unavoidable, Comcast has consistently provided accurate estimates of expected downtime and repairs, enabling The Arc to effectively allocate its resources during interruptions in service. Comcast’s on-site technicians have been helpful, timely, and worked well with The Arc’s IT company to keep things running smoothly.

Why do you think it is important to engage in inclusive volunteering in your community?

The Arc of Macomb’s mission is to help people with disabilities and their families engage meaningfully in their communities. Volunteerism – from everybody! – is an important and inclusive way for people to interact with people in their communities, particularly with people whom they might not otherwise meet. Volunteer events like Comcast Cares Day fosters connectedness among people in a community and thereby strengthens the community in immeasurable ways.

What advice do you have for other chapters and organizations looking to get involved in inclusive volunteer opportunities?

Many people want to volunteer in their community, but they don’t always know exactly how. Conversely, organizations always want volunteer help, but the volunteer opportunities they have don’t always line up with the volunteers’ availability. Comcast’s organizers scheduled a clearly defined date and time a few months in advance, held a pre-event planning meeting a few weeks before the event, clearly communicated the details of our organization and of the event, and obtained the necessarily materials in advance. The planning of the event, combined with the communication of the details of the organization and of the event, were critical to the success of the event. Going forward, most volunteerism will be centered on a clearly defined event, with clear and concise descriptions of the organization and the event.

The Arc of the Bay in Florida has had an exciting few months! In 2017, the chapter affiliated and branded with the national office – executed seamlessly by their executive director Ron Sharpe. This past month, the chapter participated in a summit focused on transitioning from facility-based to community-based employment. Ron reflected with us on the challenges and opportunities that strengthen and propel his chapter forward as they continue to advance our universal mission of inclusion for all.

First, we wanted to formally welcome you to our chapter network; your chapter recently rebranded and joined forces with the national office! What initiated that process?

We were strategically planning on how we were going to celebrate and fully maximize our upcoming 60th anniversary in 2017. We had a focus group & graduate students from our local Florida State University – Panama City Campus provide research & feedback that while we have been in Bay County, FL for 60 years, many families and businesses still didn’t know who we were, St. Andrew Bay Center, and what our mission was. We were already affiliated with The Arc of Florida, and when we reviewed what The Arc of the U.S. had to offer, we knew it would only strengthen our daily operations with the wide range of resources that would be made available to our agency…including branding and name recognition. 2017 represented the largest overall growth that we have experienced within the past 10 years in every facet of our business model…double-digit increases in our ADT enrollment, Supported Employment services and including our overall fundraising.

At the end of last month, you attended the Provider Transformation Network Summit in DC on transitioning from facility-based employment to community-based employment programs, along with four other chapters. What motivated you to attend, and what were some of your takeaways?

I attended the PTN Summit hoping to learn from other leaders within those four chapters in what they found to be successful or not within their communities within this transition. I was able to hear that we are all experiencing some of the same struggles and opportunities, but learned of different or new ideas to hopefully getting new results. We all came from different levels of years of experience, but through our ideas and building relationship, we now have another resource network to continue to build upon as we continue to work through this transition.

The national landscape is changing, with an increasing emphasis on community employment opportunities for individuals with I/DD. How is this affecting the direction of your organization as it relates to employment services? What kind of work are you doing in your chapter to advance community-based, gainful employment for people with I/DD?

The Arc of the Bay has fully embraced this process ranging from implementing an initiative of The Arc of Florida “Dream Inspired Planning” where our individuals shared what their job goals are communicating through pictures on their own dream boards to promoting individuals and their job skills and experience in our local paper every Friday in a section we created and titled “Employment Highlight”. The process with “Dream Inspired Planning” reinforces “self- advocacy and self-determination in setting future goals on what they would like to do. We also use every social media to advocate on behalf our clients, our employers and our staff on the successes made.

Do you have any advice for other chapters looking to strengthen their employment initiatives?

Sounds so simple, but think out of the box when thinking about new employment opportunities! Everything we do is “NETWORKING” and making contacts. Look at civic clubs, like your local Rotary or your chamber of commerce.

Some of the clients and providers staying at The Arc of Greater Beaumont pose for a picture in front of boxes of generous donations.

The flooding in Beaumont was unprecedented. Slowly, one by one, different sections of the city took on water. Some flooded during the days of seemingly ceaseless rain. Others flooded days after the storm, when the sun had finally come out, but when the bayous and rivers began to crest. Among the masses of those affected were people with disabilities. When one group home flooded, clients took shelter in another, until eventually a majority of homes had been damaged. Without a place to go, The Arc of Greater Beaumont offered refuge in their building. Chapter staff and their board scrambled to find air mattresses, pop up tables, and folding chairs to make people as comfortable as possible, as residents of five flooded group homes took refuge.

People saved what they could carry. John, a 21-year-old regular client of The Arc of Greater Beaumont with cerebral palsy, had a change of clothes, an extra pair of tennis shoes, a computer bag, a heat pack to help ease the recurring pain in his shoulder, and a single framed portrait of his family. He had lived in a group home in Bevil Oaks since December of last year, but unfortunately, it was almost completely underwater. Without a house to return to here in Beaumont, he feared he would be transferred to a home two hours away in Lufkin, which would put him farther from his family, his girlfriend, and his community.

The stress on clients and providers alike was palpable. Simple tasks like taking medicine became difficult due to the scarcity of water. No laundry facilities or showers were available, so providers were hand washing clothes and setting up sponge baths with what little water they could spare. Clients felt cramped. Though the space was accommodating, there was little more than a few feet between beds. Sleep was hard to come by for some, who were easily kept up by movement and noise.

Amidst the challenges, help came from our fellow chapters of The Arc from across the country, which sent supplies to help the Beaumont area. The Arc of Colorado, The Arc of Aurora, and The Arc Thrift Stores in Colorado crafted a plan to support The Arc of Greater Beaumont. Von Limbaugh, a member of The Arc of Colorado’s board of directors, reached out. Von and his son Andrew packed up a truck, loaded with 400 pounds of clothing from The Arc Thrift Stores, supplies from members of The Arc from across the state, water, food, baby supplies, medical supplies, cleaning supplies, and toiletries and they started to drive. Staff from chapters across the country were calling our executive director, offering anything to be helpful. We collected and organized donations and have been distributing them to those in need. The absence of a full kitchen made it hard to cook hot meals, yet still hot meals came from private individuals within the community. Board members for our chapter arrived with gallons of water and fresh produce. The organizations that ran the group homes did their best to fix and find spaces for their clients, and fortunately within a few days, everyone had a more stable solution to their housing needs.

Our community is still adjusting to the reality of life after this cataclysmic event. People with disabilities served by our chapter and the group homes are a part of this community figuring out how to recover. Their housing and day to day routine has changed greatly, and they’ve lost much of what has long been familiar to them. The Arc of Greater Beaumont has received numerous pleas to host events so these citizens can have a slight return to normalcy. Like any other non-profit or small business in our region, our bottom line has been impacted by this event. Thanks to the spirit of the greater Beaumont community, we have faith we will endure this hardship. And our hearts are full thanks to the generosity of our very special chapter network. We truly are a family.

Many day-to-day technology tasks have become so intuitive for many of us that it’s easy to forget life before these clicks and swipes. For people with I/DD, these skills can make a world of difference by building bridges to community participation.

In 2016, through our partnership with Comcast NBCUniversal, six chapters across the country hosted “Learning Labs” to foster digital literacy skills in their constituents. The classes’ content varied between chapters based on individual needs:

The Arc Baltimore (Maryland)The Arc Baltimore’s labs provided an overview of Assistive Technology and a demonstration of devices and software to address communication, computer access, eating, environmental control, hearing, home safety, memory and cognition, telephone access, recreation, and vision. Stories were shared on how individuals have utilized devices. A certified Assistive Technology Professional worked one-on-one with participants to identify and experiment with tools that would be a good fit for them.

Easter Seals Arc of Northern IN (Indiana)Easter Seals/The Arc of Northern Indiana hosted an instructional computer lab focusing on life skills, employment, internet safety, and money management. The session was so successful that one participant found a job he was interested during the class. The next day, he submitted an application online for that job at Game Stop and landed an interview.

The Arc of Prince George’s County (Maryland)The Arc of PG County hosted labs covering topics related to independent living, including eating healthy, resume building, tech tools for reading, grocery shopping, job seeking/applications, money value, and understanding maps. At the conclusion of the event, local companies even pledged to employ more people with I/DD! One participant, Brianna, found a screen reader helpful—it helped her pronounce words correctly in addition to easier reading. She compared it to audible books and thinks it “unleashes the power of spoken words”.

NewStar Services (Illinois)NewStar’s labs had a strong focus on iPad skills, including skills for independent living like taking pictures, iMovie, iModeling, maps, planning a trip, and setting and using reminders. Three Learning Lab participants, David, April, and Charles, requested additional labs on the Maps app, and were surprised to learn that there are bus stops extremely close to their houses that will help them gain independent access to the community.

The Arc of San Francisco (California)The Arc of San Francisco’s labs were centered on using technology for independence and employment. Topics covered included internet safety, Microsoft, LinkedIn, online job searching, and the basics of email. One participant, Kristin, was struggling with how to best use LinkedIn. After working on her picture, resume, endorsements and recommendations in the lab, Kristin landed interviews at both Google and LinkedIn!

The Arc of Lane County (Oregon)Topics on computer basics, including terminology, parts, safety/care, and typing, were covered. They worked in Microsoft Word, Publisher, Powerpoint, and used email and iPads. Most importantly, they learned about internet safety issues like identity theft protection, safe passwords, and digital footprints. “When asked about his favorite part of the class Jason exclaimed, “I was really excited to make my resume and get closer to my dream job”.

Through this simple exposure to the basics of digital technology, participants are building the skills that will support them to become more independent within their communities. We look forward to expanding Learning Labs to more chapters and building the skills to succeed in people across the country!